Associate at the Harvard Medical School Department of Biomedical Informatics' HIDIVE Lab
Alumni Perspective
by Christina Lively
I met with Lawrence (Larry) Weru by zoom on Monday, December 18, 2023. He called from the Harvard Medical School Department of Biomedical Informatics. Larry grew up in Jacksonville Florida with an interest in art and technology. His curiosity about different subjects and creativity have resulted in some projects with a wide-ranging reach. Our conversation was also wide-ranging and touched on subjects like maps, oxygen tanks, wrestling, and donuts. Larry completed the Media and Medicine certificate program and continued to the Master of Science in Media, Medicine, and Health program, and shared insights on that program too.
C Lively: Tell us more about how you first became interested in using media to convey information about health.
L Weru: When I was a kid, I was always drawing. When I was 11 or 12 years old, you had to go to the library if you wanted to use the Internet. One afternoon, a friend, Ana, had a website up, and I was like, “Oh, what's that?”It was a wrestling fansite. I thought the website was cool.
My friend said “Yeah, I made it.”
I didn't know you could make websites. I thought it was something only a big company could do.
So I learned how to make websites just by reading a book. I just followed it from start to finish.
I am a person with an art background who likes working with technology. In college, I wanted to work on projects with social impact, so I joined a chapter of United Way. We were the first chapter of United Way that was run by only undergrads. There were just 13 of us – we called ourselves the Bakers Dozen. We created a couple of events that really leveraged technology. For example, we organized one 5k event where you would sign up to run and eat a bunch of donuts.
From what we were told, this was the first time that United Way had leveraged social media marketing in this way to market a fundraising event. We had people travel from Atlanta and Miami to Tallahassee - a long way - to participate in this fundraising event. We used social media to inspire action.
So I think the combination of all those things led to me wanting to experiment with technology and art to show people something in ways that they didn't see before, and inspire them to action.
Years later, around election time, I started thinking about maps. Politicians were using maps to try to trick people into believing that most of the American population is skewed one way when that was not true, because those maps didn't take into account the actual number of voters who live in specific areas.
I created a new map that makes it easy to see how an election went in a very local area, even if it was a close race. All the existing maps that attempted to show the margin of victory never really allowed people to see which way these territories voted. I wrote a story around my map which accomplished that, and it became the subject of my TEDx talk.
Then I made another map, the Muddy map. In addition to showing whether one county leaned one way or another, this map would also help people compare relative populations more easily.
These maps fit a topic that people were discussing at the time so, even though I just published it on my own website, people shared it on social media and it got 250,000 views.
C Lively: How did you first become interested in using media to convey information about health topics?
L Weru: In college, I initially wanted to become a medical illustrator. I wanted to use the media, in this case, to help advance science through the medical images we create.
I’ve had that interest: how can you use media to improve quality of life?
I also have this critique that a lot of times we tend to focus on things that aren't going to help everybody who needs them. For example, cutting-edge medical science rarely makes its way to the average person. Many health-related problems can be addressed by existing technologies if they had better distribution.
During this time I had also made apps and did research on software engineering and human-computer interaction. I was awarded a competitive Mentored Research and Creative Endeavors (MRCE) award by my university, Florida State University (FSU), and its Office of Undergraduate Research. The research award enabled me to do undergraduate research in the form of a Directed Independent Study with mentors Geoffery Miller and Dr. Joe O’ Shea, earn academic credit, receive a small grant to support the research, and present the research at our research symposium. My research centered on the use of internet-connected devices to improve event ticketing, which informed the work we did with United Way. It also led to my development of an “Internet of Things” (IoT) app, which I called LobbyQ, that was adopted by FSU to check in over 50,000 students in several of its offices. The app helped to facilitate student advising, which is important for student success, a core focus of FSU. This experience got me into entrepreneurship. I decided to delay applying for grad school and go directly into industry to develop more business acumen. I also wanted to learn about the under-addressed issues in society while working in the trenches. Most startups fail, as did mine, but people that I met along the way valued my problem-solving, project management, and web development skills. So, I pivoted into ecommerce consulting, with my first client being a health and beauty brand, Tropic Isle Living, following an introduction by a former web development client who became a friend. In ecommerce, companies spend a lot of resources on defining their customers. A company is thinking about what the customer wants, and how to reach that customer. I ended up working with over 50 companies in industries ranging from beauty and cosmetics to orthopedics, fitness, automotive, maternal products, manufacturing, jewelry, activewear, board games, food and nutrition, and fine art. Still, there was only one company who seriously considered people with disabilities as part of their customer base.
This company wanted their site to be accessible to people who are visually impaired (blind). People in this company thought this was important enough that they hired me to re-build their navigation menu to be accessible to iOS’s VoiceOver and Android’s Talkback so that people using these screen readers on their mobile devices can navigate their website and actually go from start to finish from shopping to adding to cart to checkout. While mobile devices are relatively new in the history of the internet, screen reader technologies are decades old. However, screen readers need web developers to follow good coding practices in order to work well with their websites. There are decades-old Web Content Accessibility Guidelines (WCAGs) to assist designers and developers with this. But most people who design and build websites do not follow these standard guidelines, for a variety of reasons, which can result in inaccessible websites for people with disabilities.
The book I read as a kid to learn how to make websites had a chapter that said something along the lines of “make sure what you create is accessible so that everybody can use the things that you create.” That book is the only place I remember seeing that message. In most places I worked this was not a part of the process.
So we are creating this world where some people can get the things they need and others can't, and I wondered why the average company didn’t bother to try to make things accessible until a customer threatened them with a lawsuit. And even then, legal trouble is not always enough motivation.
At one point someone sued a large pizza chain because their website was not accessible. The chain spent several years and millions of dollars fighting this lawsuit and they lost. They could have spent less time and paid someone much less just to make those changes to make the website accessible. Even better, they could have “shifted left” and baked accessibility early into their design and development process, instead of treating it as an afterthought. This would have caught issues earlier on, when they were the quickest (and cheapest) to address. Companies have such checklists for things like “mobile compatibility” or “SEO,” and consider websites that don’t meet those guidelines to be incomplete and unacceptable. Why don’t companies consider inaccessible websites to be incomplete and unacceptable? It boils down to what I mentioned earlier about who they see as their customers and who they decide is worth building things for. Sometimes that’s due to a lack of awareness, as our computer science curriculums do not do a good job of teaching it. But, like we saw with the pizza chain, the forces of ableism and social stigma are also in play.
Most web development classes that I took – including at university – failed to even mention accessibility. When I enrolled at Harvard, there were no for-credit digital accessibility computer science courses that I could register for, and that included courses at MIT. This curriculum gap creates a skills gap.
The ability to use the internet impacts the quality of life of average people. It’s not just purchasing things like pizza. You also need to get health information online. During COVID, you had to register online for COVID vaccines, and 90% of those websites were not accessible, violating decades-old civil rights laws like the Americans with Disabilities Act (ADA) of 1991, and Section 508 of the Rehabilitation Act of 1971.
The design and structure of web content can put people’s bodies in harm’s way. Like we saw with the Covid vaccine access, the web can be “structurally violent” towards people with disabilities, to borrow a term from the late Dr. Paul Farmer. These “historically given (and often economically driven) processes and forces” define who gets to be considered as a user and “conspire to constrain individual agency” of those who are prevented access. People with certain disabilities are placed in harm’s way when the websites we use to access healthcare, education, work, and connect – known social determinants of health – aren’t designed to be accessible to them.
In addition to systemic structural violence, an inaccessible website can cause direct, individual, and physical harm. For example, digital accessibility is also about avoiding the use of rapidly flashing content that can trigger seizures for people with photosensitive epilepsy or providing keyboard navigation for people whose bodies experience pain when using a mouse due to arthritis or repetitive strain injuries (RSIs), or using large enough color contrast and font sizes to reduce eye strain and headaches for people with vision loss, or optimizing for mobile experiences to reduce neck and back pain for people who rely on mobile devices due to physical disabilities, to name a few. Inaccessible websites can also create or exacerbate health problems for people with mental illness and psychosocial disabilities.
As I mention in the introduction to my Harvard Medical School capstone paper, The Digital Inclusion Manifesto: “Sometimes natural physical variations between people become health problems because we as a society transform these natural differences between people into health problems. We build structures that cause physical, mental, and social harm to people with those variations.”
Web accessibility is not just a matter of convenience or compliance, but a health and safety issue. Delivering accessible digital experiences is an act of delivering care. People who create websites should see people with disabilities as their users, and they should see themselves as serving that important role, whether or not they themselves have a disability.
I was thinking about how to make an impact. I had seen that storytelling can change people’s minds and their behavior.
C Lively: How does narrative play into changing minds?
L Weru: I think that if we consume something that has a narrative, we have more empathy for the situation. We tend to remember it more too. We tend to have a reaction to narrative that we don't have when we're just looking at facts or the usual information that you might get like on a public service announcement. We use narrative to make sense of the world. Narrative is an opportunity to take ourselves out of our own shoes and maybe experience something that we wouldn't have thought of before.
When someone builds a website or product, they are often building it for someone else, but they don’t always have everyone represented “in the room”.
The empathy component is important in that case because it's one way to help address the issue, to help people see people who are disabled, in this case, as their customers. Having awareness of their role in facilitating access for people with disabilities can lead to change.
C Lively: It sounds like you are saying that this is an issue of equity.
L Weru: Yes, and the Harvard Medical School Department of Global Health and Social Medicine does a lot of good things in that regard, like getting us to see how a lot of things are socially constructed and there's a need for countering barriers to improve equity.
C Lively: You completed both the Media Medicine certificate program and you were in the first cohort of the master's program. What first drew you to the Media and Medicine program?
L Weru: I found the program around the time when I had been thinking about how we can use media more effectively. I wrote that article about the map that went viral and I was able to track the reach of the article on Twitter.
Online, there are often a lot of people who want to argue their side and aren't necessarily trying to learn, but just want to share their opinion. Sometimes it can be difficult to share your opinion if it's opposing somebody else's, and it can be hard to have a productive conversation.
I saw people were using that article with the Muddy map in situations where they had an opinion. They would drop the link to the article to prove their point. I wondered about the best ways to develop media that would effectively communicate this kind of information.
But while I was in the Media and Medicine certificate program, I learned how to come up with stories that you can pitch and how to actually go from “I have an idea,” to thinking about the audience, developing that story and understanding the places that might want to share that story. I learned a lot about the process of going from idea to publication on an outlet that has millions of readers like a major newspaper or magazine.
And that's a skill that I use to address other health issues that I want to talk about.
The Media and Medicine program helped me learn how to write something that can have an impact. In the program, I was able to talk about my experience of stuttering. Even during this call, I am thinking about how not to stutter- it's always on my mind.
During COVID people were starting to use this app called Clubhouse.
And because I have a stutter and I am aware that sometimes people need time to get their thoughts out, I noticed that Clubhouse was kind of shutting out other folks who weren't speaking. I know that there are a lot of people who stutter, at least one out of every 100 adults, so if you listen to a lot of people talk, you should hear at least one person stutter, but you didn't hear anybody stutter on Clubhouse. The Media and Medicine certificate program helped me write about this in SLATE.
I also spent time in the Media and Medicine certificate program working with others. In my cohort some of us really wanted to write op-eds. So we created writing groups. We all had certain expertise and we all wanted to try to make an impact. When we saw opportunities, we got together to share the idea and say “we have this idea for the story. Here's why it's important. Here's where we think it should run.”
Then we worked on it and wrote the pitch, wrote the story, and it all worked out. So that was also fun too.
During COVID, we felt there was an under addressed topic around the surge of COVID cases in India.
Many people were advocating to send vaccines to India. Vaccines were a longer-term solution, but there was this shortage of oxygen and that was an urgent need. People were dying every day because there weren’t enough filled oxygen tanks in the hospitals and a vaccine wouldn't have helped that, but none of the American news outlets were talking about that.
Some of our team members had colleagues in India. So we just got on a call and we said, “What's actually happening?” I remember one of the cohort members on the call, Dr. Jennifer Kasper, said, “My people are saying that what's really needed is oxygen.”
“Well, whoa, that's interesting,” I said. Dr. Jason Silverstein has taught us to look at what's currently happening in the news to see what is being talked about and what is not being discussed.
I remember thinking, “Well, nobody's talking about the oxygen shortage.” So you've got something that people need to hear and nobody's talking about it, so we decided to work on that.
Dr. Lisa J Hardy, who was on the call, agreed with us, and we started the pitch that evening after the call. The next day the three of us met up with Dr. Francesca Decker and Dr. Nazia Sadaf who had wanted to work on the story as well. This was such a well-rounded team with expertise spanning clinical practice, global health, anthropology, supply chain management, and writing. We decided that Vox would make a good publication for this kind of explanatory journalism story, so we cold-pitched our story to one of their editors. An hour later we got a response from the editor (this was a fast turnaround time).
The editor wanted more details, which we were able to give, and then we wrote the story. I was the only person who wasn’t a doctor, but I could draw from my experiences in e-commerce to understand the implications of the supply chain strain on delays in delivering oxygen tank refills to hospitals, so Naz and I worked on that section together. I also made a capable editor, helping to ensure that we were using language that the average Vox reader could understand, which probably made our drafts require fewer revisions when they were sent to Vox’s editor. It was a major undertaking for us to write it within the deadline, from conducting research to conducting interviews with Ruchit Nagar, founder of Khushi Baby, an Indian NGO headquartered in Udaipur, Rajasthan and Dr. Gaurab Basu, a global health leader.
That couldn't have happened without us all in the same room (Zoom room), in the same program, trying to take some time away to commit to developing our skills and also working with each other.
Doing the program as a group was kind of cool in that way. The story was featured on Vox’s front page as a top three story, and it did have an impact. Before our story ran, the CEO of Salesforce, Marc Benioff had already been “loading a 787 [airplane] with medical supplies.” But when our story ran, which advocated for using bedside oxygen concentrators to help address the oxygen shortage, he shared our story saying “India needs more oxygen concentrators,” and would go on to send additional shipments of oxygen concentrators several days later.
This article did reach his eyes and other eyes and it led to more action. Afterwards we did see more news companies in the US talking about this issue.
C Lively: After you completed the Media and Medicine Certificate program, what made you decide to continue and complete the Master of Science in Media, Medicine, and Health?
L Weru: While I was doing the Media and Medicine certificate, I was also working full time. I decided that I needed to take some time away from my work in e-commerce to try to understand more about the issues I was witnessing while working in the industry. I decided to complete the Master’s program because there are some things at Harvard that you can't find anywhere else. There are experts here who have been doing a lot of research in these spaces.
In my case, I wanted to look into digital accessibility from a health perspective.
I wanted to be around people who are looking at these social issues using the health lens, because, as we saw with COVID, it's something that was impacting the lives of people who needed access to the vaccines.
I thought that the Media, Medicine, and Health program would help me develop a better understanding of what's going on and help me use my skills, which are very media-oriented, to make an impact on that. The program did help me do this – it was a good fit.
In addition to the core curriculum taught at Harvard Medical School, I was able to cross-register into courses at other schools, which was helpful due to the interdisciplinary nature of the topics I was exploring. During my final semester, I took a class in disability law and policy at Harvard John F. Kennedy School of Government (HKS) taught by Dr. Michael Ashley Stein, who is considered one of the world's leading experts on disability law and policy. This put me in a room with students from across Harvard who are moving the needle on disability rights and culture, such as Tziona Chernoff and Priscilla Mensah who helped create Harvard’s first disability affinity graduation, and Emma Stone whose experience working for the Chief Disability Office (CDO) of New York the summer after our class strengthened her resolve to work on improving home care. I also cross-registered at the Massachusetts Institute of Technology (MIT), where I took a class in the Comparative Media Studies department on making comics and sequential art. There, I met talented storyteller-artists such as Chen Huang, Isabella Yu, and Tolu Akinbo, who helped lead Digital Art and Animation at MIT (DAA@MIT). I was also involved with Harvard Innovation Labs, where I met Lupita McGregor who became a teammate during MIT’s Hacking Medicine Hackathon. Taking classes at HMS, MIT, and HKS during my final semester created a demanding commute across three campuses in two cities, so I took the opportunity as a cross-registered student to live at Sidney-Pacific (S-P) on MIT’s campus. This central location made it easier to travel between the three schools, but it also gave me the opportunity to learn from Lupe Fiasco when he visited our residence hall to give his Presidential Lecture, and to regularly discuss my story ideas with Andrea Carney who worked on the S-P staff. These classes, programs, and conversations expanded my expertise in areas that are helpful in my work, and I also made some friends that truly inspire me and I still hang out with after graduating.
The Master of Science in Media, Medicine, and Health program put me in contact with several mentors, such as Dr. Rosemarie Garland-Thomson (RGT), a bioethicist, author, educator, humanities scholar, and thought leader in disability justice and culture who has been exploring this space before I was born and co-edited the book About Us, a collection of essays from the New York Times’ groundbreaking disability column. Through RGT I was introduced to Dr. Rachel Kolb, a disability scholar and the first signing deaf Rhodes Scholar who has since become a friend. I’m also thankful for the work experience that my classmates Liz Zonarich, Bailey Merlin, Kataria Cook, Sahana Narayan and I gained while working with Dr. Jay Winsten, who taught our analysis class, and teaching assistant Hannah Chidekel, to develop Project Look Out, a media-based health intervention in partnership with General Motors, Mattapan Food and Fitness Coalition, and the City of Boston Transportation Department. In addition, through Senior Associate Dean Dr. Johanna Gutlerner, Dr. Nils Gehlenborg, and Dr. Lilen Uchima I had the opportunity to write a story for the department of Biomedical Informatics, where I now work, and which introduced me to my new colleagues Sofía Rojas and Kyla Gabriel.
I’m grateful to have been a recipient of the Harvard Medical School Dean’s Scholarship, which enabled me to spend more time focusing on my studies, building networks, and pursuing the opportunities likely to provide for a successful post-graduate career.
My experience in the program has helped me with my current role at the Harvard Medical School Department of Biomedical Informatics, where we are pioneering this work to make biomedicine more accessible in the HIDIVE Lab, directed by Dr. Nils Gehlenborg.
One of our lab members, Dr. Sehi L’Yi, a Research Fellow, has led a project on accessibility evaluation which has found that over 90% of biomedical resources are not accessible.
This includes research journals and other resources that you need to study biomedicine. Facing accessibility barriers can make a student with a disability feel they cannot study that subject despite having an interest in the field, and they may turn to a different field, which can result in compounding consequences for our field, society, and their lives.
We need to consider “What types of research questions are we asking?” Often we think of research questions that are informed by our experiences, but we might be missing the perspective of people with a different experience. So this is also about equity again.
If you can't read cutting edge research papers because they don't have “alt” (alternative) text on their graphs or they don’t have tables properly formatted so that your screen reader can read, then you cannot follow the research, and (on a larger scale) you can't participate in science.
We are looking at the ways that we can create more accessible technologies.
So in addition to addressing how we can make the practice of studying biology and medicine accessible, we are also looking at how to make the tools accessible. Thomas Smits, an Associate in the lab, has been exploring how our data visualization tools can be made accessible for people who are blind or have vision loss.
People with disabilities can have a hard time getting jobs, not because they're not capable, but because of factors like inaccessible environments, social stigma, and inflexible policies. Access to good jobs contributes to a person’s quality of life. So this is also about workforce development.
We are looking both at technology and at how you navigate these social structures.
As we look into improving accessibility, we come to the question of how you bring people from lack of awareness to the willingness to act?
In the Master of Science in Media, Medicine, and Health program, I learned how to use media to inform and inspire action by creating a good narrative to get people interested in the topic.
That ties into what we’re taught about equity and accompaniment, where you do want to try to understand someone’s perspective by having them as a member of the team.
There is a big push to have people go into STEM. Some people might be interested in STEM fields but they are dissuaded because the materials are not accessible.
We (the Department of Biomedical Informatics) are the first biomedical informatics research group to look into the accessibility of thousands of biomedical resources like large databases. Some of these resources’ login pages are not accessible to screen readers, so there is no way for the 45% of people with vision impairments who rely on screen readers to access the data.
In our lab, we create tools that people might import data into and explore using our tools’ charts and graphs and other visualizations that are specific to our field.
To quote Dr. Paul Farmer again, “for both ethical and pedagogic reasons, research and training can’t occur without engaging in the delivery of health care to the sick (or to those likely to become sick).” Delivering accessible digital experiences is an act of delivering care. We must practice accessibility if we’re going to research it. This means making sure our tools and resources are accessible, in addition to raising awareness about this issue within the broader scientific community.
And this work will involve creating media as well.
C Lively: Are there specific concepts, skills, approaches, that you have not yet mentioned that you feel have influenced your work?
L Weru: I really appreciated the social medicine aspect of the Master of Science in Media, Medicine, and Health program, taught by Dr. Lindsey M. “Marty” Zeve. I didn't know exactly what to expect from that because I was new to that topic.
Health outcomes are irreducibly determined by biological and social forces. If you are working on an issue with a historically marginalized group, then you need to understand how the historical, sociological, political, and economic factors interface with the biological factors if you want to stand a chance at creating a comprehensive intervention.
Social medicine is – in my case – where I got to get that from. That’s a strength of our department of Global Health and Social Medicine at Harvard Medical School.
C Lively: Any other skills you feel you gained from the Media and Medicine Certificate and the Master of Science in Media, Medicine, and Health programs?
L Weru: I gained skills in both the certificate program as well as the Master of Science degree program.
The certificate program helped me learn to evaluate and value my own perspective, to learn how to share a message when nobody else seems to be talking about it. That is really powerful
With the Master of Science degree program, I was able to explore my chosen topic more in-depth with the frameworks provided by the coursework at HMS, as well as across Harvard and MIT. While there is always more for me to learn, I feel prepared for the important work that I’ve chosen to contribute to the disability community of which I am a member.
For both programs, in addition to the curricula, there is something about being in a space with people who have similar interests and have chosen to commit a good amount of time together to work on advancing their chosen health topic. That is really something that I've been able to carry with me outside of just the classes.
And this continues to make an impact because it's nice to just have that group to talk about what I'm working on now and how I can address those issues in my own work, or just how we can help each other out, which we have already done.
C Lively: What advice do you have for someone considering the Media and Medicine Certificate program or Master’s degree program?
L Weru: I think it's good to have some kind of media background, and at the same time I think it's important to just have an idea of the types of issues you want to help address.
It can help move things along faster. There's nothing wrong with changing your mind, but have something in mind already that you want to tackle and use the time that you have and also leverage the connection with the other participants and the program faculty.
C Lively: Thank you so much for speaking with me today!
L Weru: Thank you for the interview.
This interview has been edited and condensed for clarity.
Read about more alumni from the Media and Medicine: How to Tell Stories That Make a Differencecertificateprogram.
Learn more about the Media and Medicine: How to Tell Stories That Make a Difference certificate program.
Learn more about the Master of Science in Media, Medicine and Health degree program.
